Disabled woman loses all but one of 49 hours of ILF support


Gaping holes have been exposed in the government’s Independent Living Fund (ILF) promises, after a local authority slashed a disabled woman’s support by 48 hours a week when the fund closed.

Daisy* had been receiving 49 hours a week of ILF support, in addition to 35 hours of council support, but that package is now set to be cut to just 36 hours in total.

Hounslow council – which originally offered her just 21 hours a week, before it agreed to carry out another assessment – even suggested that she started using adult nappies, to lower her reliance on support from personal assistants and so “increase her independence”.

She has described the cuts as “demeaning, dehumanising and wrong and utterly, devastatingly traumatising”, and is now hoping to take legal action against the council over the cut to her support package.

ILF was run by the Department for Work and Pensions and when it closed on 30 June was helping nearly 17,000 disabled people with the highest support needs to live independently.

But the coalition government decided that it should close – despite a high-profile campaign to keep it open (pictured) – promising instead that nine months’ worth of non-ring-fenced funding would be transferred through the Department for Communities and Local Government to councils in England, and to devolved governments in Wales and Scotland.

Announcing the date of the ILF closure, in March 2014, Mike Penning, at the time the minister for disabled people, said there had been “significant developments in how we provide social care to disabled people so they can live independent lives”, and that the government wanted to “make sure that disabled people are given the support that allows them to fulfil their potential”.

Instead, the transition process has been littered with reports of delays in reassessments for former ILF-users and cuts to their care packages, compounded by many local authorities failing to plan ahead for the closure.

Daisy, a wheelchair-user with a number of long-term health conditions, who needs support 24 hours a day, already has to rely on friends, family and personal assistants (PAs) to provide unpaid support for the rest of the week, even with a package of 84 hours a week support.

But she now fears the council’s decision will destroy her social life, her links with the community, her efforts to care for her 83-year-old mother, and her campaigning and activism, as well as risking falls, dislocations, pressure sores, infections and general deterioration of her physical and mental health.

She used ILF support to speak about the imminent closure of ILF at the Glastonbury Festival speakers forum in June, just days before the fund closed for good.

As part of the council’s offer of 36 hours of support a week, she will receive just two blocks of three-and-a-half hours of support for “accessing the community”.

Before she started receiving support from ILF, she said, she was rarely able to contribute to society.

Being offered just seven hours a week for excursions into the outside world has added to her “distress and feelings of panic, fear and dread and loss of control over her day-to-day life”.

She said that being supported by her PAs to campaign on disability rights, independent living and social inclusion has been of “significant importance” to her, as the government “abuses its position of power to make cruel and inhumane cuts to disability benefits and attacks the basic human rights of sick and disabled people”.

She has told her social worker that suggesting that she would have “greater independence by being put into incontinence pads so that she wold not be dependent on carers to help her to access the toilet is a prime example of this abuse and neglect”.

She has told the council that maintaining a home where she feels safe and secure has enabled her to be “more outgoing and more able to contribute to society”, and that removing that support will “seriously affect” her ability to be part of society.

A spokeswoman for Hounslow council confirmed that Daisy was now receiving just 36 hours of support per week.

She said: “An assessment of [her]needs was carried out by Hounslow council.

“The number of hours care which [she]is receiving as a direct payment is not based on what she received in the past, but what her needs are currently.”

She refused to say how many other former ILF-users had had their support packages cut by the council.

Linda Burnip, co-founder of Disabled People Against Cuts, said they were aware of at least three other local authorities that were “slashing people’s care packages, in spite of the fact that they have had money devolved to them” from the government to cover the extra costs of former ILF-users.

And she said that no government department was monitoring the impact of the ILF closure, after DWP “dumped responsibility for it” when the fund closed.

Burnip said Daisy’s case showed that ministers were “liars”, but added: “I don’t think anybody ever believed them anyhow.”

*Not her real name

  • User Ratings (27 Votes)
  • clarebelz

    They’re so crafty as well, when they do reassessments, they’re not coming in to look at what your needs are, rather, they know before they start exactly how much they want the care package reduced to, and that’s usually to the amount of hours you pay as a contribution towards your care!

    What’s also rather humiliating is that the ‘assessors’ – who used to be degree educated social workers – are now little more than administrators, and I’m not joking when I say that some are very under educated; some can’t speak a sentence properly, and keep forgetting things and asking the same thing 3 TIMES! They have NO health care qualifications either.

    As for socialising, by the time you’ve paid your contribution, and for the private care that they no longer cover (computer says ‘no’!), you’ve little money left to even pay for taxis to see your family, let alone engage with the community. And you can see it coming with the new ‘fit for work’ test that’s being formulated; it will be a case of, if you can leave the house for a couple of hours, you can work. My social life is already destroyed Daisy, so I absolutely sympathise with you concerning the panic of a world slowly closing in; I also have an aged mother, and I haven’t seen her for over a month now because I’m so weak.

    Someone used to say to me that I shouldn’t go out, because I will be reported, but I told them, how can the government report me when they’re providing hourage to help me go out? But now I’m in agreement: your social life is the thing they will point to in considering whether you can use those hours in a job; they don’t care if it would mean that you had to give up your social life and family time.

    Daisy gets out and about, given 7 hours for such things, and that’s only right, but I get 5 and I can rarely leave the house now, and believe me when I say I’m climbing the walls here. All my carers can do for that time is sit and have a coffee with me. It’s the ‘same old’ every day, feeling extremely ill, and just waiting for bedtime. I can’t engage with any of the hobbies I used to have either. I have no quality of life in that way at all. I can understand why she feels distressed at the thought of having your engagement with the outside world cut back. I’m already there, and further, my world is closed in even more.

    As for nappies, they tried that one with me 5 years ago. A nasty newly graduated social worker suggested it so I could cut down the laundry. Apart from anything else, it’s humiliating, and also, have you seen the cost of adult nappies? They’re £14 for 12 at my local chemist. If I’m having my 3 day loo sessions, where I soil myself continually day and night, I’d easily go through a pack in a day, if not more: it would cost me a fortune over the month! And you can’t keep sitting in dirty nappies; you get ammonia burns like babies do, and I’m particularly prone to developing boils. It’s easier to use old towels, then clean up at the end of it and disinfect them. Honestly, they must think we’re made of money. In care homes, they take your pension from you and leave you with £20, and that has to cover your nappies; there’s no money left for them to buy a birthday card or presents for the family.

    The whole set up is demeaning and humiliating. As if you haven’t got enough with fighting for benefits and just coping with extreme illness continually. They ought to call them ‘neglect plans’ not care plans.

    Rant over; sorry!

    • Yes.

      Can’t get upstairs to use the toilet? Here’s a handrail for the porch. (True story.)

      • clarebelz

        Yep! Sounds like my assessment!

    • Gemma Speht

      I am scared to leave the house on my very rare “good days” and attempt to walk anymore without my wheelchair for fear as being seen as “FIT FOR WORK” for fear of my neighbours etc seeing me able to walk, and thinking, oh yeah, very disabled! Not realising that is the first time I have left the house in weeks and every single step is agonising but I am pushing through so that I may see the outside world and feel human again for a brief moment!

  • Carey

    Clarebelz, I’m really sorry that’s your experience. The council I work for is a million times better but lots of horror stories out there about others such as yours. A few things that may help you… do you have an advocacy service in your locality? They can be very helpful for information and advice and liaising with the social services teams. Is there a supported employment service? Lots of the people I work with find this invaluable (a good service will link you into employment slowly offering you a placement somewhere first so you an find your feet and skills and will be knowledgeable of how many hours to do / not do to maximise your financial position. Totally get your view on pads, if your continent you should be supported to the toilet at regular intervals. If you ever find pads may be right for you though, the local continence team will provide some for free . Hope this helps and that things improve for you.

    • clarebelz

      Thank you for your comments. Yes, I have an advocate this time around; I’m just too weak to stand up for myself at present.

      I’m afraid I’m totally unable to do even any kind of supported work. I’m already degree educated and could teach at home if I was able, but it’s not possible at all now unfortunately, as my health has deteriorated too far. I literally had to work until I dropped!

      Didn’t know about the local continence team. I’m going to ask for another occupational therapist assessment and see if I can get a stair lift now, because I’m falling daily and the stairs are getting too dangerous for me.

      It’s just sad that the ‘care’ has gone out of it now, and it’s just become a cost cutting exercise; it’s also very stressful as it’s about 3 people losing hours of work that they need too.

      Thanks again.

      • Gemma Speht

        Hi Clare, I have been reading your comments on the Guardian, and I am so glad to have read them, they are horrifying for you bless you, but also have helped me so much to want to fight on. I am actually including quotes from you to a letter to my doctor and specialist as I feel they are so important in my fight against their negligence. Please can you add me on social media so I can keep up to date with your comments and you 🙂 I am on facebook: gem.speht Or if you are on twitter etc? Thanks Gemma.x ps. I have M.E. but other very serious symptoms which they are neglecting to test me for…. as I’m sure you know the score!!

        • clarebelz

          Hi Gemma –

          Thanks for your replies, and I’m sorry about your circumstances (I obviously sympathise).

          I don’t really want to reply here as it’s a bit too public. If you PM me on facebook I’ll give you my email address (Clare Fernyhough is the name to search). Also, I rarely use facebook now; I find it a bit depressing! But I will go on it later today when my carers have gone.

          Chin up! You’re not alone.


      • Gemma Speht

        This is on a different note, but this is my letter to my recent “specialist” consultant meeting, I thought you may find it interesting and I hope you don’t mind that I quoted you :

        Dear Dr …

        You may feel that being a consultant and a doctor that your approach and treatment towards your patients does not matter, that how you affect us on a psychological level is irrelevant to your medical and analytical treatment of us.

        YOU ARE WRONG.

        It is your duty, your DUTY as a medical professional to HELP YOUR PATIENT.

        It is your responsibility as a fellow human and as a person in your position with the power that you have to affect our lives – that you clearly do not know you wield.

        I went into your consultation room with hope, I left feeling depressed and suicidal. To tell me to be prepared that I may never get a diagnosis is irresponsible and demoralising.

        As a patient we shouldn’t have to be the only ones who have to fight our doctors for tests and a diagnosis!! ESPECIALLY when we are exhausted and weak, and have little fight left in us.

        I have daily agonising pain, not just in my joints, but with light, sound, movement, headaches, body temperature dropping to the point where it hurts for hours sometimes days, nerve damage in my face from bells palsy, heart palpitations that come on like an angina attack, chest pains where it feels like someone is sitting on my chest, breathing difficulties where I can’t catch my breath for sometimes 4 days in a row!!

        I need TESTS for this! This is serious! You cannot just write us off as undiagnosed because you feel we are not WORTH testing and getting a diagnosis that could not only save our life but more importantly our sanity and dignity in wanting to live, in wanting a better quality of life – in WANTING to get better.

        I shouldn’t HAVE to fight and beg for tests for my serious conditions, but I find that not only do I have to do that, I have to do my own laments medical research into my conditions and fight for these tests that could help to change my life.

        I came into your room in an electric wheelchair, I am 32 years old. Do you not think that I would give anything, ANYTHING to be able to walk again more than 10 minutes without collapsing??!! Don’t you think that I would give anything to NOT have to use the wheelchair. To have my health and life BACK!?

        I am facing what might be another 50 years of daily agonising pain and disability. Fighting every single day to find reasons to want to live this new horrific life that my illness has drowned me in over a year ago. I am looking to you for answers, for hope, in desperation.

        How wrong could I have been. Not only did you coldly berate and “assess” my life – in the most demeaning and suspicious manner. You think I can explain my myriad of symptoms to you, my erratic medical condition of M.E., my ever changing day to day life in a short questionnaire and time slot we are given??!! Bearing in mind that I struggle to remember words, to think and talk properly anymore, that my memory has completely deteriorated with this illness??

        I wake up and I feel as though I haven’t slept for days. I am in agony from the moment I wake until I sleep again. I sleep sometimes 22 hours, no matter how hard I try I can’t stay awake. I then drag myself in excruciating agony to the toilet, try to wash myself, cry piteously as getting dressed feels like I am going to war and then have to try to cook and eat to take my medication. By the time I have done these tasks, which I am completely exhausted from and every movement has hurt I then fall back to sleep for another 20 hours. On a bad day I will not be able to lift my head from the pillow at all!! I wake, drink, take lots of pain killers try to lift myself from bed but the pain is so bad I can only lay there and eventually my body gives up and sleeps again.

        Another day perhaps I am able to, instead of having a shower and making something to eat (I have to make a choice in which tasks I can do as I have so little energy) Instead I walk in my garden with my dog, 10 minutes after hobbling around the garden I am exhausted and the crippling pain means I need to rest again. On a good day (which is far and few between) Roughly, once a week or every two weeks, I am able to use my zimmer frame to walk my dog in the park for 10 – 20 minutes.

        Before I started taking painkillers, when I first got sick I was completely bedridden in pain, I tried not taking them, I don’t want to take codeine and naproxen and then stomach protecting pills and laxatives that I now need, I don’t want to feel like I am 90 years old but if I don’t I will not even be able to get up and do the small tasks I can do now!

        The REASON I am in an electric wheelchair is not because I am LAZY or wanting ATTENTION. But because I cannot walk more than 10 minutes, sometimes less, sometimes more it depends on the day. But on average before I got my wheelchair I would be taken outside and within 5 – 10 minutes I would have to sit wherever I was, on the tarmac outside, inside a supermarket, on the pavement, grass, I would literally have to sit on the floor. I could not move anymore, the exhaustion, the pain, is too overwhelming.

        This LETTER I have DREADED having to write, as I know it will take me days of work to write this, stopping and starting, falling asleep in utter exhaustion – the pain of the typing, the exhaustion, the having to try to remember correct words and phrases.

        But, I felt it was very VERY important that you know how you leave your patients feeling after visiting you and then your report on me which sickened and saddened me.

        You said in your report, that I “particularly get sleepy in the afternoons if she did any exertions.”


        You are comparing somebody with M.E. as needing an afternoon NAP!!!! This is the equivalent of saying that somebody with cancer has a low white cell blood count!!

        You said That I have “started to use a walking stick occasionally, intermittently a zimmer frame and in the last few months an electric wheelchair for long distances”

        This is completely WRONG!! If and WHEN I am able to walk I ALWAYS have to use a stick, zimmer frame when my joints are so bad but I have some meagre energy to move some and the ONLY REASON I have been using an electric wheelchair in recent months is because I couldn’t AFFORD TO GET ONE! I had to do a crowd funding appeal to get it!! I have been housebound for over a year, I could have been using an electric wheelchair to go further distances a year ago but was unable to as I could not get one!

        I read your report on me and cried in anguish in disbelief that somebody feels they can judge me and belittle my condition as you have done.

        I would give anything ANYTHING to not be housebound, to be able to work, walk properly and run again, to have my life back. I have to use these medical reports for my disability claim, I don’t WANT to be on disability benefits!!!!

        I do not WANT to be DISABLED!!!!! I have to prove and fight the system because the only diagnosis I have is of Fibromyglia or M.E. – I didn’t have this diagnosis for a year and so for a year I did not get disability benefits!! I had to try to survive on handouts – imagine being so ill, in so much pain, fighting to want to try to stay alive, when you know that you are living less than half of a life, that if you were a dog you would have been put down by now. But I have to fight to want to stay alive even though my medical condition means I have little or no fight, no energy left to try to fight.

        And on TOP OF THAT I have to fight my doctors and the government to prove I am worthy of treatment and disability benefits to survive.
        Your report on me was so woefully wrong and undermining that I cannot use it or show it to any benefit official as it makes me out to be a liar and as somebody who is much less sick than the reality.

        I left your room and wanted to never take another test again, to never see another specialist again. I wanted to go home and take an overdose and put an end to it all.

        To be belittled and told I may as well not bother looking for answers is so SO irresponsible and dangerous.

        Every medical profession I have told about my heart problems and breathing difficulties and body temperature issues I have been told “we don’t know” “we can’t help” “we may never know” Not ONE medic in the profession has requested I have cardiac tests or asthma tests or circulation tests or iron deficiency tests. I had to not only request these but FIGHT for them!

        I recently found a woman that had the exact same symptoms as me and was eventually, after 20 years of being in the same horrific pain and exhaustion and symptoms as me, that she had now got a diagnosis of Autonomic/Small Fibre Neuropathy which graphs from the nerve induction proved. The neurologists that now treat her, were shocked that she’d not had these basic tests; one of them even became emotional about it knowing full well how her life had been ruined.
        That poor woman has to live knowing that for the rest of her life. She said “Don’t be fobbed off like I was, only to lose every single thing in life that made it worth living.”

        A man I know had the exact same symptoms as me and (unlike me, was not fobbed off and) was given cardiac tests and after 6 months of treatment now does not suffer with the chest pains and breathing difficulties.

        Mine are so bad they wake me up in the middle of sleep! They are so uncomfortable and painful, I often vomit with the shock and constant nausea they give me. I have collapsed several times with them and when on occasion with them was sent to the hospital was given basic blood tests and sent home with no information of any kind, not informed of anything, nothing – no investigation from doctors or specialists.

        And yet I have to FIGHT FOR TESTS FOR THIS??

        Your manner to me in that room made me feel like you didn’t believe me, like you were questioning my health and disability status. You actually asked me in disbelief why was I not able to work in an aggressive manner??!!

        I left you feeling completely dejected and with all hope lost. And as usual I had to fight my own dark thoughts and try TRY so hard to ignore the disbelievers and ignorance of those around me and fight to get tests, diagnosis and some fight to want to recover.

        But then to get a report from you which made me feel so disgusted and disrespected to know, that I cannot even show it to anyone for fear they may believe the tripe that was on it and I get my disability benefits cut, that I should just give up and be ridden off as a person with M.E. and a myriad of other serious medical conditions that may “never get diagnosed” how dare you!

        How DARE you have that much responsibility, that much power to a patient and their life and wellbeing and squander it out of ignorance and nonchalance of wanting to help them to TRY to get better.

        You may read this and think, oh she is just a bitter young woman taking it out on me, and you may want to tell yourself that so that you can sleep better at night. But let me ask you this –

        If I was your daughter, your mother, your wife, do you HONESTLY think you would have treated me, spoken to me and written about me in the way that you did?

        Do you HONESTLY think you would give up on them and belittled their condition and made them feel there was no hope, or would you fight for them? Test them, give them hope and courage?

        Think about that please.

        Just THINK ABOUT IT.

        Next time you see a patient.

  • Gemma Speht

    I have severe M.E. Fibro, and a myriad of other symptoms not yet diagnosed. I cannot fill out the form as it exhausts me to even write one page by hand, I asked them if I could type it – not allowed! I am still not on PIP I was not even on ESA disability for a year because I didn’t have a diagnosis so had to live on handouts. Barely live. I had to do a crowd funding appeal to get an electric wheelchair as I had been housebound for a year – the little, tiny fight we have left in us that is so meagre we have to use it to fight the system and the non believers. It is disgusting. It would be easier if I had just had my legs ripped off as awful as that is to say! I have recently been told to use the Benefit Maximisation Team from a disabled neighbour, so I am praying they will help me to get on PIP, fill out my form and I can get some form of belief, dignity and benefits that I deserve!!!!